zen and the art of autistic toilet training

I have been a bit grumpy recently and, when I think about it, it has a lot to do with Toby's toilet training. It's been 10 long months of hard work without achieving very much and it's wearying in the extreme!

When we first started to take him out of nappies back in early spring he just held it in all day which is not so great for although this shows excellent bladder control he wasn't learning to go when he needed to. By the time he got home from school he was obviously bursting and I had to resist the urge to whip a nappy on him the minute he came through the door. Instead I used to shadow his every move and attempt to divert him to the toilet before a puddle situation developed. He doesn't respond well to any adult directed activity so being made to sit didn't impress him a whole lot (in other words he had supercell, screaming meltdowns) and most days we're both in tears within half an hour of him arriving home and to top it all we ended up with a puddle anyway! In those early days he hated the toilet and I did too! 

All through the summer when he was running around naked in the garden he'd just stop and water the grass and to honest there wasn't much I could do about it although we did try and get him to wee in a bucket to get him used to the idea of weeing into a receptacle!

When the days started to turn colder as autumn arrived he was inside the house more than outside and there were around 6 or 7 puddles a day to mop up. Then we had a little breakthrough in that he started to wee over the side of the bath (although not perfect, a much better prospect than puddle mopping!) He started this all by himself and was quite insistent on shutting the door and having some privacy. I have a feeling I might be responsible for confusing things for him as I'd been saying in a loud and encouraging way 'Toby wee wee' everytime he did a wee while having a bath each night. My intention was to get him to associate the word with the action but I think it may just have reinforced that peeing into the bath is the way to go! I really should know better as I'm well aware that an autistic mind is often extremely literal!

Now I shall have to do a bit of creative thinking to persuade him to switch to the toilet! The fact that he is actually weeing on the toilet fairly consistently at school now is very encouraging but again this is common autistic behaviour - to understand something in one setting and yet be unable to apply the same thing in a different place.

With Toby I have learnt to approach everything in very small steps and it's only when you look back that you begin to realise they were actually leading in the right direction - just not a very direct route! I dread to think about how we'll tackle poo - for now it's a nappy situation and I'll need to marshall my reserves before we try and get him to use the toilet for that! Someone told me to expect toilet training to take at least 2-4 years and I have a feeling they could be spot on!

My main advice to anyone starting toilet training a special needs child is to de-stress your life as much as possible before you start and be prepared to go with the flow (sorry about the pun). The hardest thing is to keep going even when you feel that you're getting nowhere. I'm glad though that after 10 months it finally begins to feel like we may be edging slowly closer to our goal of getting our 7 year old son out of nappies and I remain confident that we will get there one day.

Incidentally, while we're on the subject I know that toileting issues are not limited to children with special needs and that many families experience the anguish and stress of continence problems. Recently Mary sent me some information about the wonderful work of the charity E.R.I.C .

"About 1 in 12 young people in the UK struggle with bedwetting, daytime wetting, constipation and soiling (sometimes called incontinence or continence problems). At ERIC, we know how worrying and stressful these difficulties can be.

That’s why ERIC is dedicated to supporting children and young people, their families and health professionals. We provide information, confidential support, services and resources. Something can often be done to make a positive difference and ERIC is here to help!"

It's worth taking a look at this video which does such a great job of explaining their work here.

Thanks for reading x

Comments

[Ballee]

Hi,
You're in my friends at Ravelry, so I follow your blog frequently.
Just want to say that I admire your way of handling. And I hope you have people around you who have the same experiences with their autistic kid.
I work on a special school (overhere in The Netherlands, its common that deaf, hardhearing and ASS children go together in school), as a teacher and remember a pupil who learned everything on a white toilet. At school we have black toilets: PROBLEM! After we find out what the problem was, we covered the seat with white toiletpaper. And removed it bit by bit when time goes by.
It worked..

A LOT of patience and looking is so important. Don't have to tell you that!
Keep on going with the hard work!
Puk

[raspberry]

Thank you for writing this so beautifully :) We have no where the issues you have with Toby, we have poo holding in instead, and I'm sorry that you will have to go through this to :(
As you say patience and getting rid of stress is the key, and in our house, really quite difficult!
I hope you get there soon, and then both you and Toby can be rightly proud of yourselves!

[French Knots]

Well done you, what perseverance. My son is 5 and still weeing at night, so I shall have a look at that website. Pregnancy is making my bladder a bit hit and miss so I probably need to read it for myself too!x

[bigbucketgirl]

Ah! Our 3yr old is lactose intolerant and allergic to the proteins in milk. He gets agitated and nervous without a nappy on and the poor soul has every right to..we have puddles but they're not wee!
Urgh..sorry!
We're hoping that over xmas we can stock up on patience (nappies all the way...ho!ho!ho!) and remove as many obstacles and stresses in the new year to resume the 'fun and games'.
Thanks for the link..
Again..you have made me glad to know you! and Toby. Very much so. xxx

[periwinkle]

I can't imagine how hard it must be for you but I wish you all the luck in the world...
Lisa x

[Jennifer]

I forget about all that you deal with on a daily basis with Toby. It's not all knitted rabbits all the time, now is it?

You write in such a clear and caring way about your challenges. I admire you and your family. I know that your words will help others.

[amanda ryan]

hi well done for sticking with his, even with my non autistic little girl i wanted to give up many times.
at my childs nursery with the boys they have a ping pong ball to aim at in the toilet, you could maybe put it in the bath then move it to the toilet?
hope it gets easier for you.
amanda.x.

[Hege]

Even though you struggel with this, you manage to make it into a beautiful post.
I can't imagine how hard this must be for you all, so I send you some hugs.

[lina]

Hi Julie, just wanted to say well done you after reading this. I can't begin to imagine how tiring this all is for you and Toby. You must be one very patient lady, sounds like you have a good perspective on this situation. I'm in awe.

[kirsten]

Yay, Julie! It sounds like Toby is really making progress! Your situation is different than ours, but it took a long time over here, too. But he'll get there.

[Fiona]

Just wanted to leave a message of support at what must be a very stressful time for you. However, it sounds like he's really improved in the last 7 months, so your hard work must be paying off!

[joanne wardle]

just wanted to say that my heart goes out to you, and you are right it is not just children with special needs. I have a perfectly "normal" six year old son, who is highly intelligent, socially developed, happy and wonderful. But we have had an ongoing issue with "pant messing". which although much improved is certainly far from completely sorted. one of the best things to know is that you are not alone and that there is no shame in it. (still getting there with that one!).

I'm glad you are making progress. As I always tell myself, it's only a small improvement, but as long as it's going in the right direction, that's good.

[Wanett]

We are having a bit of toilet training trouble in my home too. What worries me the most, we have three that will need to learn all at once, and one bathroom. Yikes!

[KC]

Big hugs to you. You are handling all of this with such grace. My son is also autistic. It's a long road filled with potholes but such beautiful flowers.

[Martine]

How awfull as it sounds, 10 months isn't that long, Julie! But I know how stressfull it is! And when you are in a period of learning something to Toby, it is VERY HARD work. So de- stress as much as you can!!!

[Jenni]

Toby is making real progress, Julie and you're a superstar Mum. I've worked with autistic children and young people for a number of years and know how great it is when the first little signs of a new achievement appear! Your hard work is reaping rewards...and though it may take time there are more to come..you're right..you and Toby will get there in the end!

[juliebogacz]

Julie, you are a SAINT!!! You are an amazing woman...I can't imagine 10 months of potty training and then some. Glad to hear you are making progress and I wish you all the best and hope that it all works out sooner rather than later!

[Gemma]

Hi Julie,
I have no experience to call on but I just wanted to comment to say you are one wonderful woman. You are so talented and productive and yet you have so much going on at home. A friend once told me that big projects need to be tackled a little like eating an elephant - in very small chunks. Hope you have a drier New Year. X

[jaci]

I wish you all the best during this trying time. You are a strong woman and wonderful mom, Toby and Amy are blessed to have you. I wish I had some magic advice that would make this transition go faster for you. Just know that a lot of us out here in cyberland are pulling for you.

[Annie Wynen]

I too have a son with autism, and toilet training was H A R D ! I feel for you. My son is now 13 and regulaly blocks our toilet with excessive use of toilet paper. It's a hard road.

[Alex Mason]

Hi Julie, reading your post brings it all back, it took us many months and was very upsetting a lot of the time, the progress you are all making is great! Hope you are managing to de-stress, take care, Alex xx

[Lucy Locket-Pocket]

You never cease to impress and inspire me with your calm way of coping with a very difficult situation. You are fab! Lucy x

[Gina]

I think you must have the patience of a saint! I know how difficult it can be!

[Mari]

I'm glad Toby is making progress - although 2-4 years sounds like an eternal job, I think you've come far in these 10 months. And perhaps it's also a good thing he wants some privacy in bathroom?
I felt over-stressed with my own life 10 minutes ago, now after reading your blog I'm ashamed. You really are a super-mom. :)

[Tania]

Julie you have amazing strength - I often read you blog and try to put myself in your situation and to be totally honest I'm not sure if I could cope - I know that will all step up to the plate when something goes wrong - but I often feel sometimes that I would not be handling things in a sane and calm manner - I'm sure at times thing are totally manic at your place and by the time you get to write your post that the tears have been wiped away and you have had time to reflect on the situation. I sure that other parents with similar obstacles admire you for writing about the every day hurdles and also the breakthroughs and milestones. Have a merry christmas -
Tania

[Deanna]

Julie, what a tender post. And it made me smile as well. You have so much strength. I admire you and all that you do.

I have an award waiting for you at my blog.

Hugs,
Deanna :)

[peggysue]

YOu open my eyes so much to the challenges that face so many parents around the world dealing with children with special needs . . . my dear daughter has a minor physical special need which pales in comparison to reading about the daily challenges others face, often quietly, often alone. I am sure you are providing hope for so many as they read your posts that although they begin with tears, are upbeat, positive and encouraging.

[julie jobson]

To Dear Julie
My children are not special needs kids but toilet training was a very stressful time , i cannot imagine how hard it must be for you. You are one special mum.
From another Julie

[shirl]

Julie,
i just want you to know that I think you are a beautiful person and you are my inspiration today.

[Monique]

Hi,
I know where you are at right now. I understand completely. I have two children with an autistic disorder and a hubby with Asperger Syndrom, so we are one happy autisic family, well I'm not, but I feel like it some time ; )
The toilet training was very hard. The thing is to try to set your feelings aside. That is very hard I know, but it is the only thing you can do, because they pick up on all your emotions and when they feel you have a problem with what you are doing, you will have a problem, because they just won't do what you want or set out to do.
I wish you a lot of luck and persistence, you will get there, I'm sure of it !!!

[Nora]

You are an amazing woman.

[Alice C]

I feel humbled by the courage that you show. Thank you for giving an insight into the challenges faced by the parents of children with special needs.

[monica]

Julie, you are amazing.

Respect.

[tina]

What a loving and caring Mom you are! Toby is very fortunate to have you for his Mother. I have no children, so I can't offer any advice, but I've had some success in sending up a prayer or two for people who can use a little help. There's always a Saint around somewhere whose specialty fits the need. I hope you won't mind if I take the liberty of doing so. I just love the beautifully knitted little animals you create. It brightens my day every time I tune in to your blog to see the latest edition, and to look at the old favorites. Thanks for a lovely blog. Tina

[Kim김]

O I'm so sorry you have to do potty training, and Toby being autistic adds more to the challenge. I thought I was loosing patience with my daughter when she refused to use the potty from 2.5 to 3.5. You'll both get there!

I was wondering, is there anything to making weeing in the potty more fun like little disks? I've seen them advertised in the U.S....They're little disks you put in the toilet and boys aim for them. :)

[dottycookie]

So many hugs, Julie - I am certain I'd have nowhere near your patience. Well done Toby for making progress though!

[Emma]

Hi Julie. It seems you have unending patience and understanding - such a tough hurdle for you all. Toby's making great progress, with your help and guidance. I admire you immensely. Thankyou for sharing this with us. You have great strength. Emma x

[joanne wardle]

duh!! I just made the connection between you and the sugar nellie rabbit stamp. I just borrowed it off a friend. I realsie now why it appealed so much. I had great fun colouring it in. thought you may like to see
http://madebyjoanne.blogspot.com/2008/12/little-rabbit.html

[Heather Lafter]

I might suggest "potty treats" rewarding pottying. Maybe even a toilet time only toy...something he can only play w/ while on the loo or for a few minutes after. Colored soap to wash w/ after using the toilet might be fun too. I have no idea if any of these will suit your child...but I do think you are a FAB mum!!

[Caroline B]

Ah Julie, symbols on velcro, where would we be without them! You are doing all the right things, I'm sure you'll get there in the end. Keep at it and I wish you a Happy and (relatively) dry Christmas!
Caroline x

[michaela]

This is real progress though and many congratulations for trying so hard and succeding, albeit in a small way. We have a number of children in school who use those picture cards - have not seen the 'wee standing up' one before. Is it wrong to admit it made me smile?

Have a wonderful Christmas and here's hoping it will be puddle free.

x

[audrey claire wilson]

Hi Julie,
I was wondering how things were going with your "little man" after his recent sickness and really felt for you both after reading this post. Toilet training is never fun, even at the best of times and can really be a pain in the bum! (please pardon the pun!) I do believe with such a dedicated, patient and loving mum as yourself he will make it! Hang in there, I really do find you so very inspirational. Take carexx

[nannisandi]

You show great strength and humour in your journey with your son. I have just finished reading"A friend like Henry" by Nuala Gardner, a true story about her son and how Henry the labrador helped her boy with new tasks.Take care of yourself as you contiue the wee wee and poo adventure

[Kate]

I'm so glad you feel able to discuss your difficulties on your blog. When my 2 children were young (long before blogs!) I felt like I was the worst mother imaginable, because no one ever complained, or yelled, or admitted in public that it's freaking hard to raise kids. So I felt like I must be the only one messing up. I'm giving you a long-distance hug, and I wish I could make you a cuppa and sit down to laugh and cry with you. Remember all the other mums who are cheering for you. Kate

[Stine]

Come visit my blog - there is a giveaway!

[Ash]

Hello! I was just referred to your site by Lime and Violet.

Alona Frenkel wrote a book called "Once Upon a Potty." My students had a difficult time with the book but they LOVED the DVD. It didn't help rush everyone through potty training but, at the very least, I have something to sing while they're trying to sequence everything. :)

[lisa]

Not much to add that has not been said. I so enjoy your blog. It brings so much enjoyment to others. I think you are doing a great job with your little one and I'm sorry it is so hard. I know God is very proud of the mother that you are! Big Hugs to you and may you have a wonderful Christmas....:)

[jennie]

My goodness what you go through is mindblowing, thank goodness for the love your children bring to your lives because lets face it who else would do what parents do for children. I wish you a wonderful christmas with gifts of peace, happiness and a bulk order of dettol

[Heather]

Hi there - my oldest daughter, who is not special needs, took about four and a half years to toilet train. It was excruciating, but there was nothing I could do once we were committed but "go with the flow", as you say. Hang in there! Sounds like you're doing great and his little brain will catch on eventually because he has a loving Mommy to see it through!

[caffaknitted]

Julie, You are an inspiration to me both as a mother and a knitter! We also dealt with years and years of toilet issues with our son, who also suffered from hearing and speech problems. It was especially hard for him as he grew older, and became terrified of sleep-overs, camp-outs, and even visits with family. We did get through it, even though at times I thought we never would. I actually learned to knit during that time, from a friend who felt I needed a way to de-stress, and it helped! Good luck with the toilet training. You won't be mopping up puddles forever, even if it seems that way.